is it like for you as a parent?
When interviewed, parents of autistic, transition-aged youth reported a mixture of hopes and worries about their children (Chen, Cohn and Orsmond 2018). As you may have experienced, uncertainty about the future, lack of guidance about how to help your youth, disruption in your youth’s vocational or educational progress after high school, or sibling symptoms of emotional or behavioral problems can all be worrisome (Taylor and DaWalt 2017; Walton 2016).
Beyond the studies, however, are the stories of individual families like yours. There are families like Robert’s where parents argue about how to help the autistic youth. There are single-parent families like my own who are desperate for a break after years of doing two jobs: a paid job to earn a living, and an unpaid one supporting and nurturing the development of a child with special needs. There are other families where parents are caregivers to their own aging parents at the very time when their autistic youth needs them the most.
Long-term concerns may also be looming in the back of your mind. The one I have heard most in the support group I attend is “What will happen to him/her when I die?” When our children reach adulthood, our own mortality comes into stark focus but this worry is magnified in the case of autistic youth. You may wonder, “Will my daughter be one of the lucky few who manages to be steadily employed and live independently, or will long-term financial and residential support be needed?” or “How will my son cope without me, when he considers me his best friend?” or “Is it fair to ask a sibling to help look after my child down the road?” Part 3 of this book addresses some of these long-term considerations.
Figure 1.1 Developmental progress by age
If you experience a grief reaction as you recognize that your child may never reach the level of independence you had hoped for, you are not alone. Many parents of transition-aged youth on the autism spectrum have this experience. During childhood and adolescence, well-meaning professionals sometimes reassure us with the statement “Their development may still catch up.” Unfortunately, in most cases “developmental catch-up” is a myth. Figure 1.1 compares developmental progress in an area affected by autism (say, social skills) in an autistic child versus a neurotypical child. As a result of good supports, the autistic child is steadily improving in this area, but the rate of improvement is slower than average. As you can see, when a child develops more slowly than the average in a particular area, the gap between the child and same-aged peers widens over time. It does not decrease. By the end of high school, the fact that the child will never catch up to peers in some areas of development becomes painfully obvious.
There are occasional exceptions. For example, some highly intelligent youth are laser-focused on succeeding in a particular field, and therefore put great effort into remediating their autism-related deficits in independence, social skills, and so on. Unfortunately, they are uncommon.
As your autistic youth becomes an adult, you may have to face the fact that certain disabilities will persist, and this realization can be hard. It is even harder when you blame yourself or others, so try to avoid looking back and instead focus on what is still possible. Pay attention to your youth’s abilities, not just the disabilities. This is helpful not only for your sanity but also when filling out applications for further schooling or employment. When you convince yourself that your youth can make a positive contribution, you are more likely to convince a prospective educator or employer of the same.
Medical and social support services are not always helpful in your struggle. In many jurisdictions, confusion abounds about what services can or should be accessed by autistic youth after high school. As in Robert’s case, eligibility may depend on a single, rather arbitrary characteristic such as IQ with no regard for the individual’s various strengths and weaknesses. You may be left sorting through a maze of agencies and programs to figure out which ones will accept your child, let alone which ones are likely to be effective.
The refusal to talk to parents of youth over a certain age (in Robert’s case, age 18) is also common, and usually justified by citing the youth’s right to privacy. In truth, your son’s or daughter’s consent to your involvement can usually bypass this obstacle, but you may not be informed of this fact. Ask to have your youth sign a consent form so you can communicate with their service providers.
Further guidance on how to navigate various services and service systems is clearly needed. This is an important topic, so we revisit it in several subsequent chapters.
The myth that it’s easy for the high functioning
You would think that higher intelligence and higher functioning would result in an easier transition to adulthood than lower intelligence and lower functioning. If your youth is higher functioning this idea may, unfortunately, represent wishful thinking. Surprisingly, adults with ASD without an intellectual disability are three times more likely to have no daytime activities compared with adults with ASD who have an intellectual disability (Taylor and Seltzer 2011b). Whether this is due to a lack of services for these youth, adult expectations that they find their own activities, exclusion from activities due to stigma, the fact that they are more aware of their own problems than lower-functioning youth (which may be discouraging), or a combination of these factors is unclear. What is abundantly clear is that intelligent youth are not immune to transitional problems, and everyone on the autism spectrum needs support when facing adulthood.
Robert, for example, is verbal and has no intellectual disability, so he might be considered high functioning. However, he loses his words without regular social contact. He is able to do some mainstream schooling with assistance, but cannot work at college level. Because of his IQ, people may expect him to be more competent in his day-to-day activities than he really is. Robert’s father, for example, thought he just needed diligence and motivation to get a job. If your youth is at the higher-functioning end of the autism spectrum, you may have encountered people with this attitude. In fact, Robert required adult accompaniment to manage even his short cooperative education placement. Without it, he might have had difficulty finding the store, knowing what to do with himself during breaks, or responding appropriately to customer questions. Moreover, Robert’s difficulties with social behavior would place him at a great disadvantage when attending interviews for competitive employment.
Even an autistic individual with higher intelligence than Robert can struggle with pursuing educational or vocational opportunities because of impairments in socialization or other aspects of daily functioning. Deficits in planning abilities, impulse control, time management, and other organizational abilities (collectively called “executive functions”) are also common in people on the autism spectrum who are considered high functioning. If your youth has these deficits, it may be hard for them to cope with daily life despite high intelligence. All of these deficits can make the transition to adult life very difficult for autistic individuals who are verbal and do not have an intellectual disability.
What predicts a positive transition to adulthood?
Now that we’ve spelled out transitional problems, let’s start looking at some solutions! As the creation of a positive transition to adulthood is the main topic of this book, only a brief summary of positive predictors is provided here, with more detail in subsequent chapters. Coury and colleagues (2014) reviewed key predictors of autistic youths’ success in obtaining paid employment and in completing post-secondary education. For paid employment after high school, these included:
• paid employment while still in high school
• greater independence with self-care
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